There are times when you feel like you have entered the twilight zone. There are times when things that aren’t real feel just a little too real.
A few weeks ago I attended the 4th Annual TeachLivE conference and entered an all too real virtual reality that I was unprepared for. I was especially excited as they were going to unveil the new kindergarten avatar modeled after CJ. I had been working with the young, future PhD, also known as CJ’s former teacher, to develop him. I had provided evaluations, videos, photos and feedback to make him as real as possible.
I loved getting preliminary drawings and giving my input. He, once again, looked remarkably like CJ did back then. He does not wear green as back in the day, CJ did not always wear green. I had seen photos of the avatar and had heard what he would be able to do. He was still in development, but they were going to unveil him to the public.
The learned their lesson last year and I was NOT speaking. They mentioned who I was in the opening session and I waved my hand. No one would even remember. I was safe and incognito this time.
The breakouts began. They had stations in a large open area. Each station had it’s own screen for presentations and casual seating, but was open to the entire area. I sat front and center so I could take some video. I was really excited. I’m a pro at this. I’m ready.
It starts with a little girl and kindergarten CJ, who goes by Martin to protect the innocent. They were sitting on a rug in a kindergarten classroom. The little girl is vivacious and talkative. She “helps” and just can’t stop herself from answering for Martin. (Reminds me a little of me.)
They ask for volunteers. One of the PhD’s got up and interacted with them. She tried to engage Martin several times. He would hesitate and hem and haw. The little girl would interrupt to “help”. After three tries, the PhD just switched to the little girl.
I was a little disappointed. These were teachers, PhD’s, PhD’s who teach teachers. It was only the first one and they were only testing it. They weren’t set up to teach a lesson and not all of them deal with children this young or ESE students.
The second person got up and only tried once to interact with Martin.
A strange thing started to happen. I started to get upset. My Mama Bear was starting to rise. I wanted to step in and I wanted to explain. I wanted to protect the avatar.
Now my internal dialogue starts.
“It’s an avatar.” “It’s not real.” “It’s not CJ.” “They are not used to doing this with this avatar.” “These are professionals.” “These are only a few minutes each.” “This is not real.”
The third volunteer gets up. She actually kneels down so she is at eye level with them. The technology allows the interactor to see where you are and where you are looking. She starts out prepared to get both of them engaged. She tells them they are going to write a story together. She says it starts out, “Once upon a time.”. She asks Martin to think of a person, place or thing he sees. She quickly realizes she has given too many options. She ends up asking him what animal he has seen. The little girls keeps trying to “help”. The PhD keeps telling her that they are going to give Martin some time to answer. Martin rocked back and forth. Martin repeats, “See. See. See.”
I was so excited that she was going to be able to draw him out. She obviously has worked with this age. I was impressed. Then she decided to help him out. She says, “The animal starts with a C? It must be a cat”.
OMG! NO! NO! NO!!!
I take a deep breath and narrowly escaped my outburst. She is trying. There is a large group watching. I have no way of knowing her experience or expertise. I have myself under control now.
She now wants to know the cat’s name. Martin rocks back and forth again. He repeats, “Cat. Cat. Cat.” I’m holding my breath by now. The tears are welling up and spilling over. The PhD decides he wants the cat to be named Cat Cat. I jump up and run out. The bathroom is right behind me. I leave all my stuff there. I can make it. I can do this without making a scene. Or not…….
My voice breaks as I really start to cry. I run into a bathroom stall. I have been thrust back in time. It was a true PTSD moment. I had so many memories flood over me. I thought all this was safely filed away in labeled folders to only be opened when I needed some information.
I just wanted to scream at the screen, at everyone. I wanted everyone to see how he was trying. He had an answer, he just couldn’t get it out. I wanted to protect him. I wanted to make them all understand.
I got myself together. I come out of the stall and the UCF genius creator of TeachLivE was standing there. She was alerted to my breakdown. So much for no one noticing my “quiet” exit. She got it. I told her that they didn’t understand, that they weren’t listening. I was completely irrational trying to explain what happened. She got it on every level. Her son has Tourette’s and is now in college. She remembers her son. She knows, she really knows. While we were talking in the bathroom, because where else do you talk at a PhD conference at a University full of conference rooms, another PhD came in to check on me. Once again, my nice quiet exit.
The genius comforts me simply by getting it. She wants me to know how valuable this is.
Session 2-
Now I’m standing in the back as there are no more seats, which may be a better place for me. A PhD came up to me to tell me her future ESE teachers need this. She thanked me over and over. She said her teachers will do what the PhD’s did over and over and ignore the ESE child. She said this is a safe way for them to make mistakes and learn. I know all this, but it doesn’t stop the pain.
As the day goes on several people talk to me to thank me. They are really excited about the possibilities for this avatar and the others. I decide if the prospective teachers can manage even a fraction of the suspension of reality that I felt, it will be amazing. What if even one child can be spared the pain? What if even one parent can be reassured? TeachLivE just continues to change the world.
Since my blog is designed to showcase life with CJ, it is easy to forget that CJ is, in fact, part of a family, not the center of his own homecoming king , football star , media hound, own private avatar world . CJ has a sister. A 13 year old, glorious long haired, smart, sassy, gets the grades, cheerleader, tumbling, “Don’t touch my stuff”, funny, full of attitude younger sister.
She annoys the crap out of him and he returns the favor. In fact, he “ruins her life” on a regular basis, but not for the reasons you think. Elizabeth has never known a life without CJ. A life without adjustments for autism is unknown. It’s not even relevant. CJ is her brother just like the sky is blue.
He irritates her. He steals her candy. He cramps her style, gets in the way of her social life and he is rude and obnoxious…which is exactly what I said about my own siblings, growing up.
See, she knows that our lives don’t always look like other people’s lives. She gets that on a mature level that fills me with awe at times. But she doesn’t think that special needs make you different, because you are you. Period.
Most adults don’t get that.
She has a friend with Downs Syndrome.She gets so mad when her friend gets a “pass” for her disability that let’s her get away with stuff she shouldn’t. She has actually uttered the words, “Bonnie is just like everyone else.She is no different and it is not OK for her to get away with it.” It may sound a bit tough at first, but think about it. Elizabeth know exactly what Bonnie can and can’t do, and she’s not looking at Bonnie any differently that any other friend working the system. She sees the whole person and not just the overlay of the disability.
I let Bonnie’s mom know that she is “just like everyone else”. She loved the moment.
Elizabeth has started taking some creative writing classes, and I’ve encouraged her to add her voice to the family story by writing about her life, and part of that includes life with CJ. So today, she’s my guest blogger.
Here, in her own words, is a slice of a 13-year-old’s life with a brother’s autism.
“Many of you don’t know this about me, but I have an autistic brother. I’m sure you are wondering what even is autism? Well, no one really knows what it is, but we have found out that it is an intellectual learning disability. This means that it takes longer for the brain to comprehend things then an average brain. This is not a disease, it’s not something you can spread, cure, or catch. It is something you are born with. It is very different for everyone who has it. It is not something someone “suffers” from. It is a pretty amazing thing.
Some people that have it are socially awkward, but some fit in perfectly fine. In my brother’s case, it is a blessing. He does not “suffer”. He has had some pretty amazing things happen to him because of this. He has met incredible people and done things that an average guy would not have been able to do.
My brother’s name is CJ and he is 20 years old. He goes to Lake Howell High School. This is his 2nd year being a senior. He still lives at home, because he can not be left alone. He is not able to call 911, if there was an emergency. So, he still lives at home when most normal 20 year olds are out of the house. We are making CJ as “normal” as he can be. He is currently working on getting a job, as many 20-year-olds would either have a job or be working on getting a job. We have also, been working on moving him out of the house and into more independent living for the past couple of years.
What is it like having an autistic brother? Not very many people have asked me that to be honest. If I had to sum it up in one word, I would say amazing. It is pretty amazing having an autistic brother because I get to do some pretty cool things and be part of an amazing world. I get to see him and his friends change to become better people.
When I was little I didn’t really think CJ was very different from anyone else. Then, I gradually started to notice that my friends brothers didn’t need someone to stay with them at the house. Their brothers were different or that CJ was different then them. I don’t really see it as a bad thing. It’s just hard sometimes when we want to do things or I want to have my friends over to the house. My house is not quiet. It’s never quiet. Some of my friends get intimidated by CJ, but most of my friends like him or just don’t really get bothered by him.
I get really offended when people talk about autism and they aren’t a scientist. They talk about how it affects people or how it feels to have it. I can get really worked up about it. It also bothers me when my friends talk about CJ in a bad way. It’s like I’m the only one that can talk about him that way, you know? I have told some of my friends that I don’t like it when people talk about CJ like that and they say that they are the same way with their brother.
I get very protective about CJ. Even if someone looks at CJ with a nasty look, I get pretty protective. One time I was ranting on to my friend about how annoying CJ was being and he asked me, “What kind of things does he do that make you so mad?” .When he said that I wasn’t really sure what to say, because it’s complicated to explain. When I say what he does people don’t think it’s that bad, but when he does it everyday for years and years and years it gets old and irritating pretty fast.
CJ had never been away from home before until a few years ago what he went to his first camp in the summer for a weekend. He did awesome and so did the rest of my family. We got to be away from him and alone for more than a couple of hours. Then, a few months later, there was another camp and this one was for almost a week. As soon as my mom heard about it, she quickly signed him up, because he loved it so much. He did great on that too.
Now, for a couple of years we have tried to sign him up for as many camps we can in the summer. Some are for a weekend, some are a week and some are day camps. Well, this summer we found a camp that is at a college campus and is for 4 weeks. We signed him up as soon as possible and the other day we found out that he got in and is going. We also found out the he is eligible to live at an assisted independent living place in Jacksonville. This is going to be such a new experience and is such an amazing thing.
Now, there are a lot of incredible things about being CJ’s sister.When I am at the high school I am automatically known as CJ’s sister.It’s okay to be known for that, because a lot of people know who I am so I already know the football players and baseball players. It’s a nice way to get my name around. I also, get to know people like Blake Bortles. He is a pretty great guy that does amazing things for CJ and our family. Also, I have met a few of my friends through CJ, like one of my best friends, McKenzie. Her brother did Challenger with CJ so we started talking and hit it off. My friend, Hollyn’s, brother also did Challenger with CJ.
I’m okay with one of my titles as CJ’s sister.CJ is basically a rock star and pretty much everyone loves him, so being known as CJ’s sister is not a bad thing. Most things that CJ does most brothers do so I can relate a little bit when my friends and I are complaining about our brothers. Being CJ’s sister is a pretty great thing, though. I get to learn about different types of disabilities that people all over the world have.
I have learned so much by being CJ’s sister. I have learned about how to be patient, not only with CJ but with other kids also. I have also learned about autism, especially and things like Angelmans Syndrome and Down’s Syndrome. So to sum this all up, being CJ’s sister is pretty cool. I would never be the person that I am and know the things that I know if it wasn’t for him. I love you CJ.” Elizabeth Williams, age 13
Sometimes you forget how cool it is to have a 13 year old teenage girl who can really understand and love this much.I love you both!
I have many friends with kids near CJ’s age. They are in college, applying to college or even just graduated. I have spent many hours talking about requirements, distances from home and especially, money. I have spent even more hours talking to moms and dads of special needs kids about our options. There aren’t many. The State of FL alone has 12 state colleges, 28 community colleges and 33 private colleges. What are the options for young adults that can’t go to a typical college setting? There really aren’t many. There is a big difference between going to college as you and I would, going to a trade school or getting a job and what it would look like for CJ.
Homes and Communities
But first things first. First, we need to find a place that CJ can live as independently as possible as HE can live. How independent does he have to be? What does he need to master before he can move in?
There are residential facilities more similar to a retirement community where there is some level of supervision. These are more like somewhere that you would expect to visit your grandparents. They can have a home or apartment with room mates or even their own place. They can offer meals and recreational activities or be completely independent. They will often offer transportation. The idea is to live as independently as possible.
Right now, I am focusing on two prospects. Both require CJ to be more independent that he is now and both are still in development. I have not toured either of the facilities. I do have a target January 2018.
I have a friend whose son moved to a “Group Home” under unpleasant circumstances for the safety of all involved. It was not what she had planned. She had dreamed and planned of a home or community atmosphere where he could live a full life. Things did not work out that way. Currently, in the State of Florida, the only way you move to a group home is “Life or Death” situations. I have actually said those words to the “powers that be” and been told “yes.” Yes? Seriously? That’s the best we can do? Basically, the person must be a danger to themselves or others. There must be no one able to care for them. (unwilling does not count) You can’t drop these kids off at a fire station. I had one friend ask seriously in desperation what would happen if she left her son at a hospital and she was told they would “pursue her for abandonment”.
My friend’s son was actually doing well. They had talked of him “going to college” for years. His older siblings had gone to college and moved out. It was what you did in their family. He was just the last to do it. He had the care he needed and was doing well. The interesting thing is that everyone I have talked to whose child has moved out has said that they are doing better outside the home as they are able to have their needs met. The families are happier as they are able to reconnect their marriages, friendships and families. They almost all, however, felt guilty. I had one mom tell me the house wasn’t up to her standards of cleanliness. All of a sudden it hit me. It’s not up to your standards. It’s not going to be. It’s not supposed to be. I looked at her and asked what she thought his living conditions would have been like in a dorm or worse, a frat house. Have any of you been in a frat house?
So, what will it look like for CJ? That is what keeps me up at night.
Tours
I took CJ with me when a group went to look at a property for a possible community. It had been a sort of boys camp prior. It was abandoned, but had buildings on it. He was VERY irritated with me that he was there. I finally asked if he would like to go to move there and live with his friends. It looked like a camp and he loves camp. I just wanted him to shut up. As he continued to run his mouth, I started to have fantasies about him living at a long term “camp” where he was safe and having a great time, but NOT making me crazy. I told him he could “Go to College”. “Oh, OK. That would be good.” Nothing came of any of it as the property was not usable. I forgot about it.
When school was starting back up in the fall we kept running into kids who were getting ready to start college or were staying local. One day we were driving and he asked out of the blue, “When am I going to ‘college’?” I was caught off guard. I would have just answered, “you aren’t going to college”, but there was something to this question. He stated it very clearly. He wanted to know. I probed further. “What college?” CJ-“That place where you took me with the buildings”. Me-???? Light bulb moment. “College”. “COLLEGE!”
He wants to go to “college.” He wants to move out. He wants to live with his friends. He wants his own life. He is 20 years old. What did you want when you were 20? I was at college and dating my now husband. I was certainly NOT living at home with my mom. You’re welcome Mom!!!
Now………How to make it happen?
Colleges
There are programs at colleges for persons with intellectual and developmental disabilities.
UCF has a program for adults with Intellectual and Developmental Disabilities http://ies.sdes.ucf.edu/
I have met people involved in all these programs. They are all amazing. They all give individuals with intellectual or developmental disabilities a chance to further their education. These programs are not designed to get a regular degree. Some individuals with special needs can attend colleges with or without accommodations and can complete degrees. There are persons with all different disabilities including autism with degrees even Ph.D.’s. These programs are not for those people. These programs are designed to be more of an assistance as a transition. They all give individuals a chance to move out and be with their peers. They are all “college” programs. They live in an environment where they are more like a dorm situation with organized activities and classes away from home and yet not completely independent. I have not heard one negative thing about any of them except the normal monetary concern about college. Here’s the problem for me. It will cost as much to send CJ to “college” as my daughter and we can’t do that. We certainly can’t do it indefinitely. I know people who were on a 5 year plan. If you get a master’s, you might be able to add two more years. Even with a Ph.D., you better be done in less than ten years. Ph.D. CJ is not likely and I need a permanent solution.
There are summer programs for adults like CJ. There is one offered through an assisted living facility in Jacksonville that is 4 weeks. It is on a college campus and is a sort of cross over that lets individuals try the program to see if they would like to attend the college or would like to move into the residential location. I look into the details and I was crushed. He has to be able to take his own medication. He has never taken his own meds, and I have always know he never would. We are out. I cried. It just feels like every time we think a door is opening, it feels like someone slams it in our faces.
Changes
BUT. Yes, but. Over the holidays he started shaving himself with a razor. A real razor. I have no idea why he decided to. He nicked himself pretty good. My first reaction was to panic and yell at him and tell him he shouldn’t be doing that, etc. Some how I managed to think before I spoke. (The magnitude of that is more than you know.) I realized that I have hacked my legs up with a razor more than once. I mention to a few men what happened and every one of them shrugs and tells me that he still has days when he cuts his face up.
Maybe I needed to reevaluate this whole situation. Several different people told me about medications options. You can order medications in packets by doses, so instead of bottles of medications, you get packets with the right combination of medications for the time of day. Some facilities will actually hand the medications to residents. They just have to actually take them independently.
Maybe I jumped the gun here. I call to find out what the facility will and won’t do. I spoke with a very professional young woman who put me on hold twice to get clarification. Answer: They can’t physically do anything. They can’t hand him anything. They can’t tell him which packet to take or not take. He must do everything independently. I had to hang up. I was so disappointed. Now, I was really crushed. There was nothing more I can do. He does have limitations, no matter what I want to tell myself or what others want to tell me. He can’t do this.
I emailed a friend as I couldn’t even talk. She emailed right back. She wasn’t buying it. CJ has surprised us again and again. She said we just need time and a plan. There are all sorts of aids. She sent me several links for ways to package medication for seniors and others. I started to feel some hope as I started looking. You can make your own blister packs with the dosages. They even sell machines that lock that will dispense the correct dosage on the correct day at the correct time. It will even sound an alarm and/or flash a light. Who knew?
Hope crept back in. I started to get excited again. (tentatively) How long did we have? A Plan. A Plan. All I need is a plan. I can conquer the world with the right plan.
I order the simplest option, small zip lock bags with a write on label. I fill them with each dose and use a different color marker for AM, 3 PM and Bedtime. I wrote in the days and separate them in a plastic container.
I had CJ come in and started with giving him the packets. He got irritated, and I got worried. Maybe he can’t do this. And then tells me it is “not his job”. Now, I’m irritated….and hopeful once again. Step up, Boy!
As I watched, he took the crusher, crushed the pills and took the medicine.
?????
It’s that easy? All this time and worry and it’s that easy?
Well…..yes and no. We still have some fine tuning to do. He got upset with me one day because there was no Tuesday. There was an extra Thursday packet, but no Tuesday packet. He simply couldn’t take Thursday on Tuesday.
I can work with this.
I made a chart that is color coded to match the markers on the bags. I laminated it and got a green (of course) dry erase marker to check off each dose. I do love a good chart and laminator.
He tells me regularly that it is “not my job”. I tell him each time that he has to do it if he wants to go to college. Do you want to go to college? Yes. Then do your own medicine. Oh. That’s different.
He still needs to be prompted. He still isn’t opening the one capsule he needs to I still keep hoping that he will just wake up one day and swallow his pills. That would make the biggest difference. He routinely swallows huge wads of food. When it comes to pills, however, he is like the dog that coughs up the pill no matter what.
I can still work with this.
The biggest lesson here is that I need to remember that no one knows what he can and can’t do. We can only move forward and try everything. I have to continue to remind myself that it doesn’t have to look like it looked for me or will look for my daughter. We can’t keep underestimating CJ. His future holds amazing possibilities and the options are growing.
What’s better than one CJ? Two CJs!! Even better is when one of them is a computer image and can be controlled and even turned off when he becomes too irritating.
Ever wish you could just use a remote to turn your kid down, pause them or even turn them off? Well, now we can with CJ or Martin. Sadly, it is only the computer version.
TeachLivE has been working with avatars trying to cover as diverse a population as possible. They make them look different, act different and respond different. The idea is to give prospective teachers as broad an experience as they can. Because they haven’t tortured these poor future teachers enough they decided to throw a little autism their way. Nothing like some special needs to spice up a classroom.
More and more special needs students are being mainstreamed or included in regular
classrooms. Teachers are expected to work with students who have a range of special needs requiring a range of accommodations. TeachLivE now can include Martin in the classroom with the other students. Martin can act as neurotypical as they decide or he can exhibit behaviors common with autism. He can hit himself. He is the first avatar able to get up out of his seat and walk to the back of the room. He can jump up and down and flap his hands, behaviors that look so much like CJ, it sends chills up my spine. His smile is dead on. He wears khaki shorts and a green t-shirt. His shoes even have the elastic laces that changed our lives. http://autismmovesout.org/autism-tying-shoes-tangled-up-in-knots/
Martin
The first time I saw Martin and the behaviors he could exhibit, I cried. This really is something that can change lives.
2nd Annual TeachLivE Conference
The 2nd Annual TeachLivE conference was coming up. I was invited. It was after school got out. My husband was off, so we all went. They want to know if CJ will introduce Martin. Well….maybe….we can try.
We decide that I will go up with him and he can at least just stand there.
CJ Meets Martin
I’m getting ready that morning and I get a text. How would I feel about talking? Talking? Normally, I love to talk. When? Today. Today? How long? 2 minutes. A room full of PhD’s and I am supposed to talk about our experience with TeachLivE. OK. I can do that. I have an hour to prepare after all.
Apparently, there has been an issue of ethics brought up.
Ethics
When you are doing research that involves people, especially people with special needs, there is a concern that they are not being exploited. Oh. This whole time I thought we were using them. I didn’t realize anyone would have an issue with us benefiting to this degree for nothing. I think it through. I guess people would be being “exploited”. dictionary.com defines “Exploited as “to use selfishly for one’s own ends” and “to advance or further through exploitation; promote:”. I could only think that we were “exploiting” them WAY more than they were “exploiting” us.
At the conference, they explain who CJ is and the avatar. I go up and CJ stays in the back holding up the wall. He is “fine”.
I start talking about our experience. I talk about how I have seen my child change. I tell the story of him asking Maria on a date. I tell about him asking all the girls at school on dates. I tell about having TeachLivE in our house. I tell about how he was having conversations. He was the one initiating them. I tell about how he wants to go to UCF at least once a week. I tell how UCF “needs” him. I tell about how people have come up to me over and over asking what is going on with him. Why has he changed so much? What are we doing? Other special needs parents want to know what it is and how they can get it.
I talk about the ethical issue that I was recently made aware of. I explain how I was so confused. I explain that there is no way to explain to anyone how desperate parents are. There is no way to explain the lengths that parents will and have gone to to help their kids. What if one more thing, one more service, one more therapy could make that difference? What if something, anything could improve your child’s future? What if one teacher is changed? What if one kid is more accepted? What if one more kid is included? This won’t just change CJ’s world, they could change the world. Dead silence. I’ve gone over. WAY over. 9 minutes 20 seconds according to my daughter’s video. I’ve taken it too far. Me and my big mouth. No one stopped me. The genius educator and engineer are sitting in the front row. Why on earth didn’t they cut me off? People begin to applaud. I think they liked it.
They take the microphone to the back where CJ is still holding up the wall. He answers a few questions and then escapes.
People continued to come up to me afterwards and thank me for sharing. Several told me they wished their administrators could have heard me as it is difficult to explain why they want to use TeachLivE.
Relief! I wasn’t a complete flop!!
CJ with Geniuses Dr. Hynes & Dr. Hughes (Missing Dr. Dieker)
The Future
What’s next? I am not sure if we will do more from home or when CJ will get to officially be with the avatars.
They are in the development phase for a younger, kindergarten version of Martin. I have been digging up old photos and videos again. We have been asked to consult again.
A while ago I wrote about how UCF has an amazing program called TeachLivE.It is a computer generated classroom complete with avatar students to help train teachers without putting any human students at risk.This incredible invention took a strange and amazing turn when a group of autistic students went for a visit.http://autismmovesout.org/autism-teachlive-is-for-lovers/CJ was lucky enough to be one of the students.After our incredible experience, I thought that was the end of our story. It wasn’t.TeachLivE was about to come home.At least to MY HOME!
I am contacted by the TeachLivE people.How would I feel about putting TeachLivE in my house?Seriously?Is it possible?How soon can you do it? What do I need to do?How much will this cost? Does my insurance cover it?
Turns out it is free…..but…there are lots of logistics.I mean LOTS!There is paperwork, funding and details of who is doing what, when and where.We are going to part of a study or multiple studies.I still not sure how many people or how many studies are involved even now.They want to get some idea of how TeachLivE can impact people with special needs.What changes can they make?How much can it help?Is it all positive or just too much?OH….The Pressure!!!!
It is about to begin.A wonderful young PhD student comes out to set everything up and show me what to do.OK.Ready for the truck.How big is it?Do we need movers?My house is really not very big.Do you need my TV or are you bringing your own screen?I know computers are much smaller now. No mainframes.No rooms full of equipment, but this is serious stuff.She comes in with a small computer bag.It is a laptop.A laptop?I am impressed and a little disappointed. I was actually worried about where on earth I would put it and keep it safe.
So, we turn it on and the avatars pop up.IN MY HOUSE!It was a surreal experience.I was a little overwhelmed.We have entered a whole new world. I’m sure that Star Trek is somehow involved.Maybe it is Star Wars with holograms.Anyway, it is amazing.It all took my breath away a little.They will be taping everything.I make them promise not to tape me!I realize that as I am talking to the avatars, I start to feel self conscious about my appearance.I’m not wearing much makeup.I haven’t really done my hair.What about my outfit?Talk about suspension of reality.I am actually worrying about what the avatars think about me.I move everything so that they can’t see the pile of stuff I have stashed in the same room thinking no one will see it.I didn’t count on the avatars coming in.I feel the need to shut down the computer before changing or doing anything private.
Day one—
I tell CJ that the avatars are coming.I’m not sure how to explain it or how much detail to go into.CJ loves the avatars, but how will he feel about them being in his home.Will he like it?Will he respond the same way?Better?Worse? Is he going to think that all his invitations to “come over to his house”, “play basketball” or even go out on a date, have finally been accepted.My palms are sweating.I was on edge.This HAS to go well.What happens if it doesn’t?Will they just stop if he doesn’t cooperate? My performance anxiety greater than almost any I have ever experienced.It’s time.I log on.They are there.I go to get CJ.CJ refuses to go in.He refuses to cooperate.Great.Now that everyone has gone to all this trouble and expense, he is not going to participate.The great battle ensues and ends with him slamming the door in my face, yelling not so nice things at me.He sits down at the computer, puts on the headphones and says, “Hi guys”. He then proceeds to have a conversation with the avatars and enjoys himself.
Day Two—
The TeachLivE folks inform me that he is already research gold.Me…..???Gold?You call THAT gold?You should hang out around here more often when he is refusing to do things.We could all get rich.They actually want to see what he likes, dislikes and how much he is willing to cooperate…or not.I am not to force anything.We work out a system where he can “earn” something.He gets to pick a “treat”, usually involving food if he cooperates. I now stock up on all possible rewards.I NEED this to go well.(after all, isn’t it really about me?)
Continues….Now, with food on the line, he’s motivated. He starts to get more excited on the days he is going to talk to them.He starts deciding ahead of time what he may want to tell them.He starts engaging with each and every avatar before leaving the room.What???He is usually trying to avoid conversations.He is usually trying to engage with as few people as possible.He will usually stick to one or two VERY safe people. Now he is the one engaging with them. He starts to ask questions.He remembers information from prior conversations and follows up with the specific avatar.
He asks “Where are you going next year? Are you going to college?”He asks about the one avatar’s grandmother that they had discussed in a prior conversation.WHAT??!!?? CJ has always had the memory of an elephant, but only to harass you about something you forgot or your worst parenting moment.He has never been one to ask about what is going on with you.He has never been one to ask about your day, your weekend, your plans.His new thing now is to ask everyone he sees, “How was your weekend?”.The best part of this is that it can be any day of the week.It is appropriate so people don’t react negatively and generally answer.It is funny if it happens on the wrong day of the week, like a Friday.He usually gets a slightly strange look, but he almost aways gets an answer.
All the sessions are being recorded, because the researchers can’t even begin to count or study all the things that are happening.There are now 8-10 PhD candidates working with CJ for portions of their dissertations.
I am thrilled. They are thrilled. Best of all, CJ is so happy.I can’t believe all of this and the changes it is making in my son.
More to come….Good thing UCF and TeachLivE have CJ.Not sure they would be able to go forward without him.One thing I know is that we don’t want them to!They might think this is research gold, but for us and, especially for CJ, it’s priceless.
Summertime.After the busy school year, you just dream of sleeping in.Lazy days.Trips to the beach.We have Sea World and Aquatica (Sea World’s Water Park) passes.They have special summer concerts and night time shows.It is really fun to go at night when everyone is leaving.We don’t have a pool, but lots of our friends do.I even dream of just binge watching some TV.
Elizabeth
What does it look like for my daughter?Sleepovers until I say no.Party after party.BBQ’s.Camps.Volunteering at church for VBS.She is gone more than she is home.My job is being a taxi service as much as she can talk me into it.Her summer is like the summers you can only imagine. The only way her summer could get any better is if we actually lived at the beach or had a pool.
CJ
What does it look like for CJ?No Sea World.He hates crowds and will get so over whelmed that he will melt down and take you down with him.He doesn’t do sleepovers.He certainly doesn’t want to sleep at your house unless he is out of town and has no option.He definitely does NOT want you to sleep at his and absolutely positively NOT in HIS room.We call it “The Forbidden Zone”.
People with autism just don’t have regular “friendships” like my daughter does.They might like each other and even tolerate doing things together, but they do not “spend time together” the same way.A friend recently said that it makes her sad that her son has no friends to spend time with.At graduation this year, all the kids were so excited and so happy CJ had come to see them.They were taking photos with him and signing yearbooks.They stood in front of him and invited each other to come over for open houses and parties that night or that weekend.They are great kids.Not one invited CJ to so much as stop by.Were they horrible people?No.Were they trying to exclude him?No.It just never occurs to anyone to include him with their other friends.I don’t think he notices, but I do.Every time it starts to look “normal” or as normal as we can get, then it doesn’t.
One of the highlights for CJ this summer was volunteering at VBS.I had told them if they could come up with something for him to do, I would volunteer as my daughter was volunteering.No pressure.It was fine with me either way.I made that clear.I got a phone call days before it started with an apology that he hadn’t gotten back to me sooner.Me….not a problem.I had told him no pressure.Then the shock….they had a job for him.Me…???????!!!????What is he going to do?Security.Me……..Security?He will be helping the guy doing security.They will walk around and make sure no kids are escaping, get bandages if needed and just be a presence.No mention of my job.I don’t even care.I’ll do anything.CJ has a job.I do make it very clear that if for any reason it doesn’t work, we can stop at any time.If the security guy just doesn’t want him to do it, let me know.No hard feelings.We go to the volunteer meeting. They hand out shirts and jobs.My name is never called.I ask.I have not been assigned a job.No problem.I’ll show up and pitch in where needed.This way I can take CJ and leave if things go down hill.We are there no more than 15 minutes the first day when both my children ask me to leave.I make sure everyone has my number just in case.The other moms look at me like I’m crazy for sticking around and tell me to run for it!I do.I get my house clean, run errands, meet a friend for breakfast and even get my hair cut.What a gift!CJ loves it.LOVES IT!He tells everyone he talks to that he has a job.A job?He is “working security”.Everyone has the same confused reaction.Security?Yes.At VBS at his church.I got more calls than I can remember in a long time.CJ said he has a job working security at VBS?Me…yes he does.He is still talking about doing it again even if he has to wait until next summer.Did I mention before that I LOVE MY CHURCH!
Probably the biggest highlight of the summer for CJ is CAMP!It is a sleepover camp.The first time he went I was a wreck.Not too much of a wreck to take off for the beach, but still nervous.He is so excited that he keeps asking me insane questions over and over.When does he leave?What cabin is he sleeping in?How would I know?We talk about all the activities.What are his favorite things to do?Swim.Games.Seeing friends.He can’t wait to see “his girl”.Who is “your girl”?He doesn’t know yet.He will have to see who is there.I asked about this.They told me that each time he goes to camp he picks a girl and then stalks her all weekend.She is usually a typical buddy.They always tell her that he is harmless and he doesn’t come within 10 yards of her, so no big concern.Days ahead of time, he wants to pack.OK.Get your bag and bring me some clothes.He brings his duffle bag he uses for camp filled with every pair of underwear in his drawer and a bathing suit.Well….You might just need a few more things.He goes and has a great time!
He does two more camps this summer.Both are day camps.One is Camp Shriver.It is part of Special Olympics.It is FREE!Did you read that right?FREE!They use a local high school where they have use of the gym and pool.He swims every day and loves every second of it.He comes home and tells me about who he saw and who he likes.He also tells me about who he hopes won’t be there or won’t be in his group the next week.Some things are just the same for typical and special needs kids.There are just some people we like more than others.
How do we get here?
You know how you plan your summer and summer vacations?You figure out a budget, pick locations, find rentals or hotels, decide on camps and other activities.If you are my daughter, the biggest obstacles are time and money.If we had the money, she would be at camps one more awesome than the next until it was time for school to start.She would have nothing but parties and fun with friends.
If you have a special needs child, it looks very different.First, you have to find possibilities.What camps are even available?Day camps or sleep over camps?What are the costs?Where do you want to go on vacation?What options are there for rentals?What can your child tolerate?
When considering a camp, first you have to find out if they will take your child.I have been extensively interviewed.Some camps require a face to face visit before accepting your child.The child is the other problemAfter the age of 22, most camps won’t take them.The problem here is that unlike most 22 year olds, they still can’t stay alone.Can your child sleep away from home?Will the camp provide the needed supervision?Will the camp give your child medication?Will your child be kicked out?
How do you get information?Like anything with special needs kids, it is mostly from other parents.People post on Facebook, email, call and even text.There are web sites and suggestions from schools.We are talking desperate here.I saw one post that said “Does anyone know of a sleep away camp that won’t throw my son out?”.She was serious.One mom posted to pray that her son made it through the week this time.I talked to parents who had been thrown out of camps before the summer was half over.I ran into a mom about half way through the summer who has three boys with autism.Yes, you read that right.Three.She was asking, like we all do, what we were doing this summer.The question is not just polite courtesy like it would be with my daughter.It was quiet desperation as she explained they weren’t eligible for one camp and she had heard of one that we were going to and that she HAD to find something else to get through the rest of the summer.
I have been talking to friends all summer whose kids are making them nuts.Their kids are fighting.Their kids are bored.I understand.I really do.I also can give you a list of parents who would kill for those complaints.
The future
What happens now?What does the future hold?As our children turn 22 and “age out” of schools and programs, what happens to them?What happens to our other kids?What happens to our families?Right now, I don’t know.I have hopes and dreams like everyone else.There are more options every year.A summer job would be great.As he gets older, I would love for him to get some job experience.I would love for some different camp type options.When typical kids get older, they often work at the same camps they went to as kids.They have started having some of the special needs kids volunteer at the camp CJ attends overnight.If he could work at a camp for even a few weeks, it would be great.I do know one thing.As the population of people with special needs over the age of 22 increases, the need for something for them to do increases exponentially.CJ for one WANTS a job.After all, he does have experience working security.
What do they call it in the movies? Suspension of reality? Suspension of belief? When you forget that it is not real and you are sucked into a story and you believe if only for a short time that it is real?
We have officially entered an Alternate Reality. CJ is the local expert in his field. He is the one you call if you have a project, if you need to test an app or program, or just need to interview someone. We have had several graduate students come out and interview him. Not me. Him. We have TeachLivE using him for their development and him using them to improve his dating skills. We even have the local genius testing her new app on him.
A few months ago I got an email from a young woman working on a science fair project. She had been working with a PhD at UCF to develop some technology to use with persons with Autism to improve social skills. CJ had come up at TeachLivE and she had heard about him asking the avatar on a date. She wanted to know if it was OK to mention CJ in some upcoming interviews.
Me….sure mention away. It’s all on line. And in my blog. (I am sure she anxiously awaits the next entry.) 😉
I get another email from her asking to talk to me to ask some questions.
I talk to a delightful, poised, very intelligent young woman. She explains that she had met with a Ph.D. at UCF, Darin Hughes. She had worked with him on a game he was developing to improve social skills in persons with Autism. She was interested in getting CJ to try it. She wanted to have local TV video him playing the game for an interview. Absolutely. She does not go to CJ’s school. The school she goes to does have an ESE program and we know several of the students. I almost asked her why she didn’t just use someone at her school, but didn’t want to pass this up. She was obviously interested in his connection to TeachLivE.
So, she explains to me that the game had to be played on a computer. She rewrote the code in Java script so that it can run on iPads and iPhones. Me. ?? You what? Of course you did. That’s what I would do.
I knew she was smart, but seriously. We talk for a few minutes. I ask where she is going to school next year. I’m thinking Harvard, Yale, MIT…possibly UCF to continue her work with the technology. I’m sure Sheldon is there somewhere. Definitely Wolowitz for sure. She could be Penny, after all. (just much, much smarter)
She says….wait for it….she’s going to be at her high school again next year…she’s a …..FRESHMAN!! Me……………………………………………………………………………..
I’m not speechless often. I am this time. Soooo……….You really ARE the local genius.
So…now the UCF geniuses have a high school genius on their side.
So….the Local Genius contacts me a few weeks ago. She is doing the interview out at UCF with a UCF station and she wants CJ to come and see the app and see if he can play it. She wants to video him and possibly talk to him.
So…we troop out there over spring break. We meet a delightful, tiny, very poised genius. CJ always wants me to leave. I warn them and leave him in the room with the genius, her brother, who DOES go to Harvard and the reporters. Elizabeth and I go off in search of Wolowitz and Sheldon. I am SURE they are here. I wish I had taken photos of the labs around us.
Elizabeth and I end up talking to the professor who teaches the STEM class the local genius is doing her research through. I decide that Elizabeth and I are slackers. I also decide that I would have like science WAY more if I had known about all this.
CJ loved the app and learned it right away. The local genius shows it to me. It is brilliant. I can see so many opportunities here. I have said from the first time I saw TeachLivE work with CJ that there has to be someway to make an app. If I could just recode into Java script…..I say as we fade to a dream sequence.
They come out and the reporter asks if CJ or I would be interviewed. I told her CJ probably won’t but she can ask. Would I? Seriously? Try to shut me up. I look down…..well….at least I’m wearing a clean t-shirt today.
I go to answer a couple of questions. They wire me up. They start with a question about TeachLivE and CJ. I stop them right there. I explain that I will start talking, but they will have to edit it as it is not an easy answer. I talk for WAY too long. They ask a few other questions. I have thought about all of this A LOT!
What are the possibilities here? What if there was an affordable app that people anywhere could download to use wherever, whenever they wanted? What if this helped even a little? What if therapists and teachers could use it?
There is no way to explain to people the level of desperation families feel when they get a diagnosis. There is no way to explain the feeling of inadequacy you feel when you keep thinking what if I did one more therapy? What if I did a different therapy? What if I did one thing different and that made the difference? There are stories out there about how a family dropped everything and enlisted leagues of volunteers and armies of therapist and “cured” their child of autism. What if I could have done that? What if you could do that? What would it take? I know people who went as far as having invasive procedures done. People are desperate.
What if an app could help? What if an app could make a difference?
We leave and other than my disappointment in not meeting Sheldon , I am thrilled. I hope to continue with the genius. She’s adorable and brilliant. CJ liked her, too. You can tell, because he couldn’t look at her.
I get an email that the interview aired. I have permission from the genius’ father to post it. I even have permission to use her name. Her name is Sapna….personally, I like the Local Genius, though. By the way….I talk WAY TOO long! (as usual)
When you live with someone who has autism, you spend your days living side by side lives in two parallel universes. In CJ’s universe, I think the sky is green and all the clothes are loose and baggy and chicken nuggets grow on trees. My family is aware of this of this sort of disconnect because we live with it every day. But once a year, the world gets a reminder too.
Last week was Autism Awareness Day. Each year, everyone is supposed to wear blue to show support. Each year, I forget. Some years I don’t even own a blue shirt. I don’t have anything with the “Autism Speaks” puzzle pieces on it either. CJ’s color is green. My color is red. Period. Autism…well, autism gets my support every day of the year already. I have the bumper sticker. I think I have an attitude as well.
It’s baseball season at CJ’s school, and the team and coaches wanted to recognize Autism Awareness Day. Could CJ throw out the first pitch of the game?
Sure. Absolutely. As long as he isn’t actually involved in the game. I made myself clear. There could be no repeat of the once-in-a-lifetime football experience. Meaning NO tight pants! Basically, if it’s not loose enough to hide a baseball in it, CJ won’t be wearing it.
Autism spoke at my house that day.
The day of the game, I dug through my drawers and found a school shirt that just happened to be blue. No puzzle pieces though. I put on my Autism ribbon pin and some sandals and off we went to the game.
When we got there, we found the school selling original design T-shirts. Of course, they say HAWKS, because that’s the school’s mascot. No brainer. But the lettering for the word is made out of puzzle pieces. In all the colors of the rainbow. With an Autism Awareness ribbon behind.
I stood there blinking, because that was some seriously fine design work for just another ball game.
Then CJ walked up to me, sporting the shirt with a big thumbs up and a “gotta love it” grin.
And then he turned around.
Not only is CJ throwing out the ball…he’s on the team! And the whole team is wearing these awesome shirts with their numbers on the back, ready to play the game. And CJ is Number One.
I got to my seat in the bleachers and looked down.
Right smack in the middle of the field. Lake Howell on a puzzle piece!
And the icing on the cake? The cherry on top?
The team had invited the Challenger players out onto the field. They walked out onto the field and their names were called out over the loud speaker. We were already buzzed with excitement just watching this moment in the sun. Then CJ threw out the first pitch, and not a bad throw either.
And then…the team presented me with a check for Challenger.
If I haven’t said it before, or said it lately, I love this school. The level of thoughtful kindness, creativity and support both the staff and the kids have shown to all the special needs kids in their sphere has been overwhelming and has been a gift of real joy for so many people. At this school, we win whether or not the kids win or lose the game. They are learning every day that there is more to life than winning at sports. They are growing hearts and minds for a lifetime.
It’s been a couple of months since I posted. Feels like about three weeks.
CJ had his fifteen minutes of fame and got quite used to his new normal of The Entire World Has Gone Green Just For Me. A month after all the excitement, the “winning” touchdown, the TV cameras, and people wearing green body paint in the bleachers…well…all I can say is, thank goodness Christmas came right up on the backside of it all, because nothing less than Christmas could keep CJ’s enthusiasm for his own life up as high as it’s been.
I love everything about Christmas. Love the decorating. Love the baking. Love the making gifts, the holiday shows, the lights. CJ loves parts of it. It’s overwhelming and overstimulating…but he absolutely demands we produce a Christmas tree and outside lights. It’s mandatory. He also insists on knowing when everyone one else is going to decorate their trees and houses, and waits impatiently for them to get to it. Of course, just as soon as we get everything up and lit, he starts wanting to know when we’re going to take it all down. It’s a fine line, timing it right so he doesn’t build up too much of a head of anxiety on either side.
He also loves giving Christmas gifts to everyone. As he’s never been voluntarily holiday shopping in his life, this means he is actually volunteering and offering step up for anything that needs to be made or done.
The fact that he is actually volunteering me to bake and knit and craft is completely beside his point. He’s one jingle hat short of Santa CJ and I am his elf. And now that his social life and contact list have blown up in the wake of all football excitement, my normal short list of teachers and neighbors turned into 30 containers of Christmas cookies plus extra for the coaches’ office.
I’m gonna need a bigger oven.
Along with the tinsel and lights and cookies came a phone call from my doctor. I’ve had a place on my liver for about a year now that was concerning, and after a new round of internal close-ups (bad lighting, no makeup), while he thought it was benign, he decided it had to come out.
Well. Merry Christmas to me.
At that point, everything became a blur. Anyone who knows me knows that I am Douglas MacArthur, Genghis Khan and Judge Judy, rolled into one organizing, do-not-get-in-my-way-when-I’m-on-a-mission-or-I-will-roll-over-you-with-my-minivan Commander In Chief. Suddenly, December 25 was just a stopping point on the way to mid-January, when I would have to actually set foot inside a hospital for the first surgery of my life.
Just for some perspective, I would rather give CJ a haircut and shave every day for the rest of my life than spend two hours getting hooked up and prepped for…anything.
So while my oven was turning out dozens of cookies, I began making lists. Lots and lots of lists. It gives me the illusion of actually having control. Especially when I laminate the lists and I can see at least one over every major appliance and from any angle where I stand inside the house. With lists, even if I didn’t make it through the surgery, I would still be there, telling everyone where to go and what to do and how to do it.
Meanwhile, Life, with a Capital L, kept on coming.
CJ got a letter, a cap and a signed ball from a Kansas City Chiefs player (that was a jaw dropper, and one of the nicest letters I’ve ever read). Then he was awarded his football letter along with the rest of the team (didn’t see that one coming and another jaw dropper). Then, and I am not making this up in a post operative fantasy, CJ was voted MVP by the entire team. After I picked my jaw up off the floor yet again, I let the coach know I was concerned that a very deserving player on the team had missed out on the honor and I wasn’t quite sure what to do. The coach, a man after my own organized heart, did a recount and realized that the second place player had voted for CJ too. The whole team had decided.
I suppose it’s true that he did play in the only game they won this year. We’ll take it.
CJ now moves the MVP trophy from his bed to his table in the living room to the floor in his bedroom, depending on wherever he is at the moment. He holds it while watching “his” press coverage saved on our DVR. He would sleep with it if he could figure out how.
I took Elizabeth with me to visit my sister in North Carolina. I had seen snow once, but I never got to see it actually fall before. My husband stayed home in Florida with CJ and we actually got to fly instead of road tripping with CJ. I love my son, but it was crazy how unstressed I was. There was a six hour flight delay and three hours sitting in the airport, and I just kept smiling and smiling until nobody wanted the seat next to me.
OH! I forgot to mention that CJ had his first date!! He took his Best Buddy to Steak N Shake. Of course, this means that I had a first date too, as I went along. I discretely sat at another table, far enough away not to cramp his CJ style, but near enough to hear now and then. And take a few photos. Poor CJ.
Mind you, his Buddy is drop dead gorgeous. She won a scholarship pageant, plays basketball and has interviewed with Harvard and Yale. She’s is bilingual, and is even more beautiful in the inside than the outside. She told me later that CJ talked to her that night more than he ever has. She told me that he told her all about how Elizabeth and I spent New Years at the beach.
Beach. Snow. Close enough.
Aim high, CJ. Aim high.
Mercifully, school started back up, which gave me the time I so desperately needed to start really freaking about over my upcoming surgery. Even ignoring my fear and loathing of hospitals and needles of any kind, there was still the fact that someone was going to carve on me, and me and a piece of my liver were going to part company. And somehow, some way, the world was going to have to struggle on without me for at least a week.
This is exactly what OCD freak mode is for.
I typed. I washed. I shopped. I scheduled. I worked up directions for the oven, the washer, how to clean the floors, work the locks on the fridge and pantry, how to clean the bathrooms, use the microwave, use the internet and shop for food. I stocked up on chicken nuggets and pretzels. I emailed teachers. I printed labels. I made an entire notebook, and if it wasn’t in the notebook, it was laminated.
I was in my element…in my glory. I eventually realized what I was doing was what is second nature to me now: making sure that everything in CJ’s life was as close to unchanged and normal as possible. If he knows what to expect and what to do, then he can deal, which means everyone else can deal too. Surgery, smurgery. I was preparing to delegate my role as Supreme Commander of the life of an person with autism, and Eisenhower on D-Day couldn’t have done any better.
And, thankfully, everything turned out fine. All results came back negative, no one starved and the house didn’t burn down. We couldn’t have asked for better, kinder support from friends, family, neighbors and our church. I have had more offers of help than I could ever accept. I have to admit, it’s nice to be needed. But it’s also good to know that my family can step up when they need to.
Turns out, all this is cramping CJ’s style though. He needs me to get back to normal as soon as possible so he can go on a second date.
It’s been way too long since I’ve posted, but one thing I’m slowly learning is that you can’t be living life and documenting it at the same time. Doesn’t stop me from taking pictures everywhere I go though.
The last few weeks have been…well…insane.
I woke up on September 18, a perfectly ordinary morning where the usual insanity I like to call our family routine unfolded just like it does every day. And like every other day, I assumed that our insanity was contained within the walls of our house. Our lives might be nutty, but everyone else out there was at least approaching normal…whatever that was.
CJ was invited, as always, to the high school football team meal that evening. As you know, CJ is a enthusiastic fan and sideline cheerer for his team. He’s basically an honorary member of the team and he never misses a chance to be part of the activities around a game he will never get to really play.
I went to say “Hi!” to the coach. He was nice as always. Very calm. Very sane.
He said that he wanted to talk to me about something.
He told me he wanted to put CJ in a game.
The Cliffs of Insanity
“Are you insane??” I said. Actually, thankfully, I was too stunned to be that rude, but I admit I thought it loudly in my head. So I just stared at him.
He asked what I thought.
“A real game?” I asked. “Like, with people in the stands and cheerleaders and bright lights and a band?”
When he nodded, I stopped staring and I told him I thought it was a bad idea. Really bad. I tried to explain that CJ couldn’t run plays, he couldn’t follow directions. He just…couldn’t. No way. He would ruin the game.
As the nightmare unfolded in my head, the coach explained that he had an idea. He would put him in the game and he could take a knee. If the team handed the ball to CJ and he took a knee, the play would be over.
Now, I am all about including the “special” kids in anyway possible. I have always pushed for CJ to be included where he could be. “Mainstreaming.” “Least restrictive environment”. The big buzz words. As a IEP totin’ warrior mom of a son with autism, I’ve always pounded on the doors to get him into the widest world possible. He loves typical kids. He eats in the cafeteria, goes to the classes he can, and he gets along well with just about everyone.
However…and I have walked a fine line on this…I have never wanted CJ’s needs or behavior to prevent other kids from learning. I have never wanted him to be in a position where he might disrupt a class. And I never in a million years would have considered putting CJ in the middle of a football game where it would negatively affect the other kids or the score.
Apparently, I lack imagination.
Actually, looking back at the last few weeks now, I realize it kind of got beaten out of me over the years. When CJ was born, he was BIG. Nine pounds plus, with huge hands. The doctor joked that we should just put a football in his hands right then, because that clearly was going to be his destiny. His first toy was a stuffed football. While other babies watched Sesame Street, he watched football. He could shoot 8 foot baskets by the time he was 3. He could spiral a football by the time he was 4.
And then CJ was diagnosed, and bit by bit, our dreams fell away. Our world became a one of “can’t” and “won’t.” He couldn’t do this. He would never do that. And again and again, we were right.
So…you move on. We made a new world and a new normal, even if it didn’t look like anyone else’s. Football didn’t go away entirely. Through the Challenger League, CJ was finally able to play. He played with his peers. He had a great time. We had found his place. But that place was on the sidelines for high school football games.
He’s is a great motivator. I love it. He loves it. He is not, however, one of those special needs kids that could be put in a game like those great videos you see on YouTube. No way, no how.
So when the coach asked what I thought, I told him the truth. He was insane.
Insane people never believe they’re insane, so he ignored me and got me walking toward the office where all the necessary paperwork was. Paperwork. We were going to document this insanity with a sports physical and other details that your typical high school football player has.
There would be a practice. There would be a jersey. There would be a helmet. And there would be football pants…tight fitting, snug football pants.
And then suddenly, I knew: if CJ would let the coach stuff his hypersensitive, sensory issues self into all that gear, that would mean CJ wanted this more than just about anything he’s ever wanted in his life. This was the chance of a lifetime, if CJ wanted to take it.
Who was I, with my bag of crushed dreams, to say no?
Number 89
When the time came, the assistant from his classroom started with the helmet. CJ told me it was too big for his head. I’m not sure if that meant it was heavy, tight or he just plain didn’t like it. I can’t imagine that there is anything comfortable about a football helmet, regardless of your issues. But he had to wear it for practice.
I asked him if he wanted to play. Yes. No hesitation. Yes. He wore the helmet.
Next time, he put on pads. Hated it. They hurt his back, he said. “You want to play?” “Yes.” “Then wear the pads.” He did.
A few days before the game, he put on the pants. That poor coach stuffing 220 lbs of resisting CJ in those pants! THAT I would have paid to see, but I was banned from the locker room.
They gave him a number: 89.
I got a video of him throwing a pass in full gear. That moment was so fabulous, I teared up.
In that moment, I saw CJ looking and acting like the typical kid he would have been before autism came to stay. Someone was handing me back a small piece of my dreams while making CJ’s dreams come true.
It was really going to happen. I started telling people. People wanted to come. People sincerely, really wanted to come. “Come! Come!” I said. It was going to be CJ’s night. I was overwhelmed with how many people wanted to be there. Then someone said that we should let the local paper know. That the school should get credit for this. I realized they were right. Every time a moment like this gets out, it gives the parents of a special needs child a glimpse of possibilities.
So I sent a discreet note to the paper, letting them know of the remarkable thing this school was doing. Maybe nothing would come of it, but I had to try. I got a response immediately. They had already called the coach. They wanted to come out and interview CJ and some of the players!
Interview CJ. Hah! Now the rest of the world was apparently insane too.
Crazy World
The paper came out and took some video. They ran the story the morning of the game. People started calling me to let me know CJ was in the paper, which I found hilarious and touching.
Next thing I know, Fox News wants to come to our house before the game.
To interview CJ.
They are going to be there during the game to film CJ for the night’s news.
Oh, and also, they want to know if I would bring CJ to their studio the morning after the game.
For an interview.
I said yes to all and made an appointment with my doctor for a sanity check.
Fox News came to our house. CJ wouldn’t come out of his room. But he did decide to let the reporter and camera man in. I, and my astonishment, had to stay out. So I stood outside holding my breath. And he did OK! He “yes ma’am”d her and answered a few questions. It was fine. It was perfect.
This was his second TV interview. Apparently, he’s a pro now.
Then they wanted to talk to me. We went outside. I gave them my best “it’s all great…dreams do come true” speech, sincerely meant, but with one ear out for my two suspiciously perfect children inside. Sure enough. Within minutes, there were screams from in the house. I went in to find the kids fighting. It’s no small thing when a 220 lb 18-year old gets mad at his 80 lb sister and we take it very seriously. Great. I separated them and went out to finish the interview, feeling like a fool.
Bright Lights, Big Crazy
Afterwards, I took CJ with me to the school early to get dressed for the game (the pants, oh the pants!). I pulled up behind the Fox News truck, which was surreal.
Then the AD and assistant AD arrive and I see this:
CJ’s favorite bright green and his number. The game hasn’t even started and I’m already crying.
I wandered into the stadium to find NBC, CBS and the Orlando Sentinel there. The reporters were already talking to CJ and the assistant coach, filming him getting his pads and helmet on. Good God, he IS a pro!
I could see our friends starting to arrive. I saw people who hate football. I saw whole families with special needs kids that would normally not be there, sitting together. I saw people from church. In fact, our church sent a whole cheering section. There were people there whose kids go to rival schools.
Then the students showed up. The kids had made signs. Tons of signs, all with green letters with CJ #89. Keep in mind, the school colors are blue and silver. There was no green involved with either team here.
A kid I didn’t know walked by with “CJ” painted on his chest. I could hardly see for the tears.
The Impossible Dream
We were 0-5 at this point in the season and it had rained every game this year. Rain as in cancel the halftime show rain. But not tonight. Tonight, there was a breeze for the first time in months and not even a hint of rain. Nothing was going to ruin this moment.
CJ was supposed to go in after the clock ran out at halftime. The other team knew this. At the end of the second quarter, the clock was running down. The student section started chanting for CJ. The moment was here. They put him in. As he ran onto the field, the students started chanting “We love CJ!” Louder and louder. The football players were all at the sideline cheering. And then announcer said his name.
He went up to the line as the quarterback. When he was handed the ball, CJ skipped almost the whole 5 yards to the goal line while my husband cracked up about his “lightning speed”. My son, who was wearing an uncomfortable uniform and helmet, surrounded by roaring crowds and bright lights, was practically walking on air. My daughter, who was fighting him two hours prior, was standing with tears streaming down her face. Looking around, there wasn’t a dry eye in the stands.
At the end of the game, CJ went back in for the last play. He took a knee on the clock. And we won. We won for the first time this year!
At the end of the game, everyone was singing the alma mater. The players were chanting “Go CJ” over and over. And CJ was whooping it up. Smiling bigger than he ever has. Pumping his helmet in the air. Throwing his arms around the players. The boy who doesn’t like to be touched and hates looking into cameras wouldn’t stop hugging people.
He had his arms around the players and coaches. He smiled at the cameras. I got a photo of him with his sister. And I got a family photo of us all on the field! It might be the only candid family photo ever for us.
And just when I thought there was nothing left that could make the night any more spectacular, the coach called the players over. He told them he was breaking with tradition that night and giving away the game football to CJ. CJ, who was voted the Most Valuable Player.
Fifteen minutes after the game, he was still taking photos. Everyone wanted a photo with him up to and including the entire group of cheerleaders.
Suddenly, CJ was gone and I went looking. I found him in the locker room, desperately trying to get out of the uniform. The pants were the biggest problem. The poor coach had to help one last time.
Last Stop on the Crazy Train
We rolled home, exhausted and exhilarated by the wonderful insanity of that night. I couldn’t even begin to express my gratitude to CJ’s coach and everyone else who came together to give CJ his dream, but I vowed I would do so tomorrow morning, after we’d all slept 12 hours.
Except we had to get up early the next morning for a live interview on Fox Morning News. Halfway there, I realized in the rush, we’d forgotten to give CJ his meds. This is usually a recipe for social disaster, but we were already running late. We had to risk it or not go at all.
CJ brought the game ball with him and did great. Without meds.
Meanwhile, Twitter blew up. The kids were all tweeting #TeamCJ and #CjsStory. For several hours #CjsStory was trending on Twitter nationally. It was a whole new kind of crazy. Photos were being posted everywhere. @ellen and @sportscenter were tweeted. Papers in San Francisco, LA, Chicago and New York ran the story.
I took a nap.
It is quieting down, but it was a wild ride. Ellen hasn’t called. Sports Center hasn’t either. I figure they can probably smell the insanity.
It doesn’t matter. Nothing matters except that CJ played real football. CJ played for every kid who didn’t make the team. CJ played for every special needs kid out there. CJ played for his parents, his sister, his church, his friends. And CJ played for himself.
There are times when you feel like you have entered the twilight zone. There are times when things that aren’t real feel just a little too real.
It starts with a little girl and kindergarten CJ, who goes by Martin to protect the innocent. They were sitting on a rug in a kindergarten classroom. The little girl is vivacious and talkative. She “helps” and just can’t stop herself from answering for Martin. (Reminds me a little of me.)
The third volunteer gets up. She actually kneels down so she is at eye level with them. The technology allows the interactor to see where you are and where you are looking. She starts out prepared to get both of them engaged. She tells them they are going to write a story together. She says it starts out, “Once upon a time.”. She asks Martin to think of a person, place or thing he sees. She quickly realizes she has given too many options. She ends up asking him what animal he has seen. The little girls keeps trying to “help”. The PhD keeps telling her that they are going to give Martin some time to answer. Martin rocked back and forth. Martin repeats, “See. See. See.”
